Philzone.org - Philzone Phansite Community Discussion Board: Hep C Support & Awareness: ARCHIVE 2010: Hello All.

I'm new to the site.. I'm Chris from Long Island.
I've been a fan since the mid 70's, I'm also a violin/fiddler player for almost 40 Yrs. I love All things "Dead" or related musically. Though I've been involved with the bluegrass and blues seen quite a bit in recent years. Like alot of Folks from our time I picked up the Hep C in my teens and didn't know for 15 yrs. Then when I DID find out I didn't act on it. Kept drinking and all. 3 Yrs ago I did the Chemo thing. I was one of the unlucky and had horrible side effects. Until they come up with a new drug I'll have to tough it out. I have Cihrosis but no swelling or scarring. Because of some bleeding/anurysm concerns I'm having an endoscopy tomorrow. To anyone who is going throgh the Interferon treatment or is suffering from liver failure and its related conditions, I WILL pray for you and if you want to share stories (WAR or otherwise) I will listen and
most likely relate. I know that I already feel better knowing that my "second family" is in recognition of this problem and is there for us with compassion and kindness. Rock on you children of the rainbow!! Thanks again.

Welcome Chris, wonderful folks around here presuming they will be greeting you in due time.


peace

Glad you joined and thanx for sharing that, Christopher. Please feel free to hang out and do let us know about the endoscopy.

I beg you call the tune! (couldn't resist)

Chris,
Welcome to the hepperboard !

Welcome Chris you have come to a grate place and get ready to meet some grate peeps....and of course everyone has a point of view LOL!!! sit back enjoy , rant or do whatever you need to do and we will listen....and hey jump on over to the other stuff folder ..we have a great gal over their called fiddlelyn
guess what you two have in common....she loves talking fiddles....

Welcome to this place of support and caring.

Hop on board and keep coming back. THis place will give you hope! This is the best spot around and there are new meds on the horizon. Hep C IS NOT a death sentence. Itno bed of roses but life is DOABLE and this place sure helps!
Peace
RTD

Welcome, Chris. Good folks here. Glad to have you on board.

(~;-> * <-;~)(~;-> * <-;~)(~;-> * <-;~)
welcome, chris. So glad you made it!!
(~;-> * <-;~)(~;-> * <-;~)(~;-> * <-;~)

Welcome Chris!

Welcome Chris, I had a very bad reaction to the treatments as well. Guess we both wait for a new drug, until that nothing but the best.

Peace

Ed

Aloha Chris. Glad you found us!

Claudia

Welcome Chris, I am so happy that you found us here,and welcome to the Pfamily !!
You have found a pfamily with alot of love and alot of caring and support; so if you ever need us, we will be there to help !!
Good luck and again welcome !!!

Have a very grateful day !!!

Bruce

~ Welcome .....I got me a violin ******

Lovely name ~ it sounds like you have had a rough & tumble....like a few of us in here *

I hope your road stays smooth enough for you to get through without anymore treatment*....do you know what Geno type you are ?

~ Anyhow Welcome aboard buddy *


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Hey all. Thanks for the warm welcome. It really is nice to have you guys.. First, to lilly (thats a lovely name I named one of my violins liliana)My genome type is 1, a. I had my endoscopy friday which confirmed that I have varcie's ( three viens in my liver/stomach area which are at least to some extent bleeding) this condition normally accompianies cirhosis, so they put me on blood preassure meds. to lower the pressure of the "portal hypertension" and another med to control the incessant itching. ( something to do with bile duct acids.

To Ed, my side affects were brutally phsycological and I belive worse for me than ANYTHING I have ever felt physically. I have some theories on that.. but they are only theories.

Clem

Chris, welcome. You've found a good place, with the best folks around. Plenty of love and support here -

~ Chris * ....I am so sorry for not being able to post just yet *.....I'll come back by * - we have alot in common healthwise *....and my son plays left handed violin & classical boroque style?...( spell check) ....guitar ~ so I would love to hear more about you *

you have some much needed experience and info that is very needed in here *** so please hang in *

~ catch you soon ****


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Welcome Chris.

Hope the bp meds work and the itching goes away.

All the best to you.

((( ~ hi ya Jazfish !!! )))

~ Chris -

- it sounds like you are gearing up ready for the transplant list * I have cirrhosis travelling into my portal veins now & have had bleeding - I have had continous trouble with bleeding in my esophagus which caused me alot of pain but I'm doing much better now* I'm on cancer alert according to my blood tests & now have scans every 6 weeks & blood tests every 4

it sounds like you may need a stent somewhere along the line to ensure the pressure stays under control - diet is so important ** I notice if I don't stick to a daily regimine I wind up in hospital with ascites & edema ...right now my ankles are thin and i have lost some weight again ...which seems to go up & down like a jo jo .....I am actually more frightend now when I shrink down & things stabilise....I have still have options so I'm happy - headaches from amonia have hassled me no end & the itching has'nt hassled me at all ...it's more like a crawly feeling* neuropathy in my hands and legs makes me niggly & moody

in the 'Archives' thread at the bottom here below..... there are some threads that have some great info about what is happening to us -

Ed' has suffered some similar shitful side effects as well..& of course when we write about it it always sounds like we're all dying or something ....))) it's funny how we can have all this happening on the inside & we look OK on the 'outside' ....like cancer - it's a sneaky quiet virus & as long as this virus is attacking our livers with cirrhosis we are 'at risk'

~ when you say you don't mind chatting about 'war' ...does that mean you to' were in Vietnam like our Ed ?......

...and what sort of music do you play ?...have you got a band ?....our Gazza ( Gary ) & Pelle & a few of us in here play or have played music around the joints - so I am sure there will be plenty to share about that *

~ anyhow ~ I hope all is well with you * look forward to your posts as slow as it is in here & all ...many of these Zoners email eachother...ring.....myspace...twitter....facebook....all in one day !!' ....so I think it may be an 'american thing' ....over here it's called info overload...so it seems not much is being said in these threads nowa days which is a shame * but I am sure they are all supporting eachother 'off stage .....

but just know many people read these threads ...even from waaaaay over here * so hang in and have fun* and keep sharing your experiences ....it can help so many crew *



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Welcome, Chris.

Lots of commonalities.

Amonia becoming a problem here. No more red meat for me I guess.

Glad you are doing better, Lil. Did you get the pics I sent?

.......

~ Yes I did Mark * .....thanks' they were nice clean shots * ( my son just walked in to chat just as I was typing this ....so I have probably missed you

She is coming out here for January & February - (( so maybe if Pikey is up for running me into the city I may be able to get to see her *

...Ls'd gave me a copy of her 'Before the Poison ~ with 'wilder Shores of Love' it's just as good as her old albums ...her voice is one of those legendary sounds that seems to stay better than before

She has done amazing stuff even after getting thru breast cancer & Hep C .....she is such an amazing woman


...I just got back from seeing George'....as you know he has cancer thru his lungs & liver and he's finding it hard to breath at the moment in this heat - it's waaaaaaaay hot over here - we seem to have incessant heatwaves in every state & the hospitals 'air conditioning is'nt working thru some of the rooms so Lsd & I sat around with him half naked & sweating .......he wants us to bring him home out here... for a day or two - which I am on here now trying to organise with someone

I have'nt caught up with Pikey since he was down south with 'Bear' at a conference - pikey was an invited facilitator ( & the PLC band played as well they drove down in my old van* - I can't believe it still drives that far !! ).....& 'Bear' of course was a 'special guest' - he has'nt done conferences for many years ...so it was an for honour for everyone * ( & healthwise he's dioing well *

here is one of our links Mark'..I know you would be interested * he did 'two talks one on -'The economic consequences of black markets, specifically in reference to drug prohibition'. -

...and another on - 'The effects of certain psychedelics on mind function, including interactions with electronic circuits- a possible route to mental machine control'

http://www.australianethnobotany.com/viewtopic.php?p=20657&sid=6e546eff1a0be35a314d002fa49d1801

~ anyhow ~

I came on to check my mail & my email box is chock a block full & I will have to just delete them all - so if I offend anyone ...I'm sorry - I want to chat with you Mark ...I'll just get thru some of this stuff here over the next few days & ...we are also about to fix up another shed/studio for my son over the next few weeks so......no doubt there will be alot of swearing going on *....((( & that always wears me out !

.....anyhow I'm glad I stopped by & caught your post * ((( I was actually hoping Hillman had posted something ~ which is why I was looking in here at the zone * ....I have had so much stress lifted from me of late ....just for another pile to land - ...but I'm sailing along no worries ***


~ always thinking of you my friend ** )))



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...."No more red meat for me I guess.

- Good ...& about time *****

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...wow ~ Mark !....thats a big post with hardly any woords in it ......you can see why I have fallen behind in my emails !!! (( sheez.......

~ Bumpity Boo Boo ...Choo Choo -

Hi out there Chris ...I'm sorry for hijacking your thread like that !

- I hope all is going well on your end *

welcome Chris!

Doing O.K.
The endoscopy went alright but confirmed the 3 viens that are leaking in my stomach area. The related cirohsis is about the same.. end stage.
They want another Cat scan to be sure of no tumors ect. Hey Lilly, when I said "war stories" I meant the Chemo and crazy life experiences. There have been so many interesting parallels and journeys, I'm sure its the same for you (as we get older. Hehe)My oldest just turned 18! Her name is Amanda Lynn. (: (I couldn't resist the musical reference) Musically, I learned Classical violin at 9. By 10 I wanted to play "cooler" music so I started replicating guitar riffs on the violin. In my teens I got into Blues through a guy named Louisiana Red. Did that for quite awhile. Most recently with Sam Taylor. (cool history on Sam you can google that) I have a rock band also Peasants Harp, where I play electric violin and sing. About 4-5 Years ago I got into Bluegrass fiddlin at Bill Monroes Beanblossom in Indiana where I got to Jam with Ralph Stanley2 and some other nashville greats. But truthfully I just enjoy pickin, and jam with lots of players of all levels. I have a day job and all.

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~ Hi Chris '


...you said ~ " They want another Cat scan to be sure of no tumors ect.

- Stay on this one * a few crew I know have had tumours overlooked with an ultrasound & even a CT - but you have more hope with a CT I'd say ...& a combination of blood testing of course '

the overall outlook when looking for cancer is a combination of different tests to eliminate areas that are not effected - it's like looking at tiny blood vessels....& you know how many of them we have ! .... I hope you remain safe *

I'm going to go away & checkout some of those things you have mentioned so I can get back to you * a bit later *
my son taught himself classical business ...he has a big swing from dark industrial sounds to beautiful classical tunes most of my family play music or make art' I am a half baked guitar player & I love piano - we have a group of performers & musos that make up our Pagan Love Cult band - many of us have known eachother since we were young teenagers....so depending on whats going on depends on who's playing * Pikey is the head of the show *

- mind you I have been inundated with my health for sometime...& have'nt felt like anything musical much - sometimes songs can make me so sad I have to remove myself - & my voice has gone like a little tree frog * I think I am going thru some sort of sentimental journey with some of our 'elders passing away ..over these past couple of years ...I use to sing alot with George ( who I have mentioned in here & is currently dying of liver cancer & lung cancer & my ex' partner... when I was younger*

I'll pop back when i can * (( & I had to laugh about the 'war stories' ...you should have said 'Dragon slaying' ...(( I think thats the lingo for our Hep C trip *.......wink'...wink*

.......

~ and ~ " Amanda Lynn " ~ ...is just beautiful *...(( very clever *** ))

~ hi again Chris

....I sussed out your band * & you guys sound great ! - ...& I also googled some of those names you mentioned & it's very cool buddy ~

I have a friend who went over there last year to play called Bill at one stage he also played in Texas & I wanted to hook him up with some zoner musicians etc ...but I could'nt think of any I could trust to be polite enough *......wink'...wink'...))

anyhow I thought I'd throw his myspace page on - he is very good friends with one of my 'ex partners & has used his artwork for his cover ...I just thought I'd throw it on ..on the way past ~

http://www.myspace.com/billjacksonmusic

we should start a thread that everyone can throw on some 'musician friends ...that we have -

so we can all have a listen *It would be great to hear what everyones doing ~

- & again .....I love the name ~ Amanda Lyn ~ just beautiful * I'll pop back again soon * thanks heaps for sharing that info Chris & I am going to keep checking the sounds out as well

- have you spoken to the doctors about your choices in maintenance with your liver ?.....yet ?



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Lilly, well as of now I'm on Nadlol for the hypertension/bleeding issues and colestipol hcl for the itching. (its normally for colestrol but works on those bile related acids supposedly. Overall I'm feeling better and sleeping better too. I'm still feeling alot of improvement with my new lifestyle, booze and pill free. Its been almost a year and everyone see's such a difference in my attitude and phyiscal well being. I DO pray alot and read as much as I can on Spirituality, creativity, metaphysic's and psychology. I'm an addmitted Book junkie.I also belive in our ability to change imagery to facilitate healing or accept change. How are you feeling lately? Are you diagnosed with liver cancer?? Have you done the Interferon?

Christopher,

email me. I have a few books you might like.

peace

whitey-x